Dealing with parents dealing with Dementia

[rotten42]

My family is dealing with these very issues right now. Mom has mobility issues. Dan had heart issues and the early stages of dementia. We can definitely see the change in his personality. He's gone from a man that worships the ground my mom walks on to being very impatient and mean spirited with her. We currently have home care coming to the house to help them out a bit but are actively looking at private facilities that can take care of our dad better then what he is getting now. It just gets so depressing seeing the toll it takes on everybody.

[Northendzone]

i have seen suggestions that when people get dementia they basically revert into the children they once were - so if you were a childhood bully, you may be more prone to being a dementia patient who is more aggressive and prone to voilent outbursts

[CliffFletcher]

There’s no standard dementia - it affects people differently. Some people revert to childhood. Some people withdraw. Some get restless and impatient. Cognitive function declines, but some people retain good memory. You can’t really make generalizations about it, and the experiences other people have dealing with it in loved ones often don’t apply to your own situation.

I recommend those coping with being a caregiver to someone suffering from dementia get in touch with the Alzheimers Society. Their counsellors know their stuff, and give useful guidance and support.

[bigtmac19]

I'm sorry CC - I've been through all this with my parents, who are both gone now. It was a very hard road of many years, and I had all the same feelings you have and are experiencing. It's so hard to watch your parents decline, realize that they will never be there to take care of you again, that it is now your job to take care of them. They wanted to go to assisted living, but once there, hated it and my Mom was always talking about moving back home. My sister had moved into their home when they left. Eventually my mother was so unhappy she stopped eating altogether. We didn't know this at first, the facility didn't inform us, until she went downhill so quickly from malnourishment they sent her to the hospital and by the time they found a bed for her at a continuing complex long-term care facility, she was only there about 4 days before she passed away. Within a month of her death, we realized the assisted living was no longer enough care for my father and we had to find him a nursing home. It was a decent enough place but it was soul crushing visiting him there. He was in a dementia ward and they just parked the residents by the nursing station and basically that's where they spent their days. Once when I arrived he was parked in the TV room by himself, slouched over in his chair and drooling. I've never been so devastated. He was in and out of lucidity. He lasted there 8 months before he died. I think he just lost all will to live.

It's the worst thing to go through, and I so sorry. Take care of yourself. We are all here for you, to listen and support you.

[karl262]

60 Minutes did a series of reports that followed a retired couple over many years from the wife's diagnosis.

At the beginning the husband was fully willing and prepared to do whatever is necessary. Later in the series he was totally broken and talked about putting a gun in his mouth.

Horrible.

[cam_wmh]

Originally Posted by rotten42

My family is dealing with these very issues right now. Mom has mobility issues. Dan had heart issues and the early stages of dementia. We can definitely see the change in his personality. He's gone from a man that worships the ground my mom walks on to being very impatient and mean spirited with her. We currently have home care coming to the house to help them out a bit but are actively looking at private facilities that can take care of our dad better then what he is getting now. It just gets so depressing seeing the toll it takes on everybody.

Originally Posted by rotten42

All I got out of your post is, me, me, me, me, me, me, me, me, me, me........

[CaptainCrunch]

Just a bit of a bump on this. I've been really having a lot of trouble over the longest time, but I have to admit that tonight I feel like a bit of a weight has been lifted off of me.



My mom moves into memory care tomorrow, so I won't have to visit her in a chaotic hospital environment. My Dad moves into the same facility but in independent living and seems to be looking forward to it.


I know the relationship between my sisters and me and my dad will never be the same, I can't guarantee that there will be any kind of reconcilliation in this. We're not going to have happy family gatherings, its not in the cards.


But at least my mom is going to a place where she will get good care. At least my dad will go into a place with a social setting, where he can easily visit my mom every day.



There's still a lot of work to do on the legal side of things as that's a bit of a mess, but at least for now, we've got some breathing room.

[RichieRich]

Originally Posted by CaptainCrunch

Just a bit of a bump on this. I've been really having a lot of trouble over the longest time, but I have to admit that tonight I feel like a bit of a weight has been lifted off of me.

My mom moves into memory care tomorrow, so I won't have to visit her in a chaotic hospital environment. My Dad moves into the same facility but in independent living and seems to be looking forward to it

I know the relationship between my sisters and me and my dad will never be the same, I can't guarantee that there will be any kind of reconcilliation in this. We're not going to have happy family gatherings, its not in the cards.

But at least my mom is going to a place where she will get good care. At least my dad will go into a place with a social setting, where he can easily visit my mom every day.

There's still a lot of work to do on the legal side of things as that's a bit of a mess, but at least for now, we've got some breathing room.

You did the right thing for them.
I’m envious on some ways as I’ve been attempting to push this concept (memory care for one, and a balanced proportionate care for the other at the same facility) for some people in my life. But I’ve been pushed out of the conversations and away from the decision making. This won’t end well.

[rotten42]

Not a great day yesterday. Dad is in the earlier stages of dementia. I visited him in the hospital yesterday. For the first time....he didn't recognize me. You could tell he was struggling to figure it out. Knew the face but not who it was.

[sketchyt]

My dad died from dementia a few years ago. Well... he more starved because dementia robbed his ability to swallow properly. Time from official diagnosis to death was about 11 years.

I've hesitated posting in this thread as I don't have much interest in re-living any of it, but seeing what some of you are going through at the moment... I'm hoping some of what I learned can help:

• They call it 'the long goodbye'. This is accurate. It changes you. And it's brutal.
• Quality of care and life are your first priorities. This applies to everyone directly involved.
• Once your loved one is officially diagnosed with alzheimers/dementia, start looking into long term care. You do not need to feel guilty about this. Anyone who makes you feel this way (maybe outside of the spouse) can GTFO.
• It's rarely ever pleasant, but they need the help and it takes a while to get them into a proper home.
• Do your research on which facilities work for you. Some are pretty bad. Visit them and if something smells funny (figuratively and literally), GTFO.
• The family caregiver(s) needs to be the health advocate. Everyone else can GTFO.
• Visit often, be nice to the PSW's. They do most of the work.
• You will experience and see things you don't want to see. Be prepared for this.
• Try not to get frustrated at bad days because this is a marathon. Take full advantage of lucid moments while you still can.

[Sliver]

Anybody have any thoughts on the MAID (medical assistance in dying) program in Alberta being used for dementia?

I know for a fact I would rather take advantage of that shortly into dementia rather than go through the whole long process at great emotional toll (and expense, I'm assuming) on my family.

I also wouldn't want to be the point person helping a loved one through all the stages of dementia when the end is a foregone conclusion. I would hope anybody under my charge would be willing to bow out early.

[RichieRich]

Originally Posted by Sliver

Anybody have any thoughts on the MAID (medical assistance in dying) program in Alberta being used for dementia?

I know for a fact I would rather take advantage of that shortly into dementia rather than go through the whole long process at great emotional toll (and expense, I'm assuming) on my family.

I also wouldn't want to be the point person helping a loved one through all the stages of dementia when the end is a foregone conclusion. I would hope anybody under my charge would be willing to bow out early.

When is the right time? Too early? Too late?
Sometimes the family wants to keep the person around longer regardless. Sometimes but likely less often, they get the person into care too soon.
As I said to my extended family - it’s better to deal with the situation and plan a little too soon, rather than too late when you have run out of options.
Too many family’s choose the latter. Or after something real bad has happened.

[sketchyt]

Originally Posted by Sliver

Anybody have any thoughts on the MAID (medical assistance in dying) program in Alberta being used for dementia?

I know for a fact I would rather take advantage of that shortly into dementia rather than go through the whole long process at great emotional toll (and expense, I'm assuming) on my family.

I also wouldn't want to be the point person helping a loved one through all the stages of dementia when the end is a foregone conclusion. I would hope anybody under my charge would be willing to bow out early.

My thoughts:

• I've seen absent families swoop in later stages of life to get that sweet, sweet inheritance. I'm concerned this program could be used for this purpose.
• Even in early stages, I'm not super confident someone with dementia can confidently make that decision.
• I'd be supportive of MAID and someone with dementia if it was clearly and legally documented before diagnosis. Much like someone signing a organ donor card.
• I would also want to see a lot of rigour and thought put into things like, when to do it when mental faculties no longer exist. It sounds like some of that is in place in my brief look at the program.

EDIT: I don't believe this was in place for my dad at the time, but even if it was I wouldn't have known exactly what to do. We never talked about this sort of thing and my dad was a bit of a traditionalist.

Near the end, I wanted him to go ASAP as no one deserves that. My browser history I'm sure was pretty interesting during that time. Still... I wouldn't have known 100% if he wanted to die.

[ben voyonsdonc]

I've told my spouse that, if I was diagnosed with Alzheimer's, that I'd 100% want a MAID. I'm hopeful that there can be medical improvements prior to that which would make Alzheimer's less of a burden but I'd want to die surrounded by the people that I love the most when I can still remember who they are.

[Northendzone]

for me, i would want MAID; however, when such an order would be executed is complciated.

i know i would not have wanted the responsibility of making that decision for my parents.

CC, I hope that you and your family can somehow find a way past all this stuff as surely your parents would not want your family split apart as a result of them being dealt this condition.

I personally find it hard to believe that somehow anyone could find a "silver bullet" to cure this or stave it off. The brain is such a complex piece of machinery.

[bigtmac19]

Originally Posted by CaptainCrunch

Just a bit of a bump on this. I've been really having a lot of trouble over the longest time, but I have to admit that tonight I feel like a bit of a weight has been lifted off of me.



My mom moves into memory care tomorrow, so I won't have to visit her in a chaotic hospital environment. My Dad moves into the same facility but in independent living and seems to be looking forward to it.


I know the relationship between my sisters and me and my dad will never be the same, I can't guarantee that there will be any kind of reconcilliation in this. We're not going to have happy family gatherings, its not in the cards.


But at least my mom is going to a place where she will get good care. At least my dad will go into a place with a social setting, where he can easily visit my mom every day.



There's still a lot of work to do on the legal side of things as that's a bit of a mess, but at least for now, we've got some breathing room.

You did the right thing CC.

[rotten42]

Another milestone yesterday. My dad doesn't know who his wife is. They've been married for 66 years and to him that's all gone. Absolutely devastating to my mom.

[CaptainCrunch]

Originally Posted by rotten42

Another milestone yesterday. My dad doesn't know who his wife is. They've been married for 66 years and to him that's all gone. Absolutely devastating to my mom.

Yeah, my mom has those days, and worse still she had really steep emotional changes, she's fine one minute and angry the next, which is hard on my dad.



I've told my Dad that even on the days where she clearly doesn't know who he is, to still have a nice visit, talk about general things, and also try to answer he questions simply.



Also, I told him to cut his visits shorter, he can't spend all day long with her, its exhausting for both.

[RichieRich]

The spouse of one of our elderly parents still seems to think they’ll “just wake up, and snap out of it one day”. Yet it’s been a gradual slide and even moreso the last few months. Yet they won’t ask for nor accept external help, only family help. At times I think the one with dementia is more physically healthy than the one with caregiver burnout.

[rotten42]

Originally Posted by CaptainCrunch

Yeah, my mom has those days, and worse still she had really steep emotional changes, she's fine one minute and angry the next, which is hard on my dad.



I've told my Dad that even on the days where she clearly doesn't know who he is, to still have a nice visit, talk about general things, and also try to answer he questions simply.



Also, I told him to cut his visits shorter, he can't spend all day long with her, its exhausting for both.

Luckily his mood seems pretty constant. He goes in and out of clarity. Seems to know what is going on one moment and then off on a tangent the next. He doesn't have a lot of time left. The hospital is moving him to a private palliative care room. At least this way he can have a few more visitors that can see him one more time. I've given my kids (grandkids) the option to go see him. There are instances in my past when I went to see a dying relative that I much rather would have liked to remember them from before and not what they were like in their last days.